Symptom Relief While On High-dose Estrogen!

[janiedelite]

I've been debating about posting... I started taking Clomid (a high-dose estrogen) as a part of an infertility regimen on Monday. I'm bloated and puffy, but the first thing I noticed Monday was that I wasn't peeing out everything I drink! I've gained a few pounds since then (water weight, I'm sure), and my POTS symptoms are the best they've been in years!!! BP is pretty normal, and I'm hardly flushing at all. I actually feel kind of awake, too!

I'm not exactly rejoicing in this fact because I quit taking this pill in 2 more days. I guess I forget how sick I am, though, until something quirky like this comes along and I feel better for a bit. But I am a bit encouraged because I've put off trying new POTS meds since we've been trying to conceive. Maybe there is something out there that will work for me!

By the way, we're just going to go through 3 cycles of the clomid. I'm also insisting on an ultrasound just prior to ovulating to make sure my ovaries don't release too many eggs. One baby will be hard enough... I honestly don't know what I'd do with twins! If there's no luck within 3 cycles, I'll go back on birth control and start trying out POTS meds. Birth control has some estrogen in it, though, which might help a bit.

[Tanzanite]

Estrogen increases blood volume which helps with POTs hence the reason in feeling better. Birth control pills used to help me but this time they haven't so much and am experiencing worsening of POTS symptoms at the time of the month on the pill than off it. lasting a shorter time, 2-3 days instead of a week or more but more severe. I blame it on getting a bit older now lol

[janiedelite]

Hi Tanzanite, thanks for sharing your experience on BC. I'm hopeful that there is some relief for me in the future.

[firewatcher]

I have had to discontinue my Estratest and can feel myself sliding backwards already. Estrogen is necessary for proper function of the female brain. I have lost a pound a day since coming off and i know it is water! The water retention by estrogen is a completely different mechanism than the renin-aldosterone system. Once Dr. Meanie is done with his hormonal testing, I'm going back on the pill since they are having a cow from me being on the HRT.

[njfainter42]

I have had to discontinue my Estratest and can feel myself sliding backwards already. Estrogen is necessary for proper function of the female brain. I have lost a pound a day since coming off and i know it is water! The water retention by estrogen is a completely different mechanism than the renin-aldosterone system. Once Dr. Meanie is done with his hormonal testing, I'm going back on the pill since they are having a cow from me being on the HRT.

I always had my worst episodes mid cycle which I think is when progesterone is released (with ovulation) which lowers BP. Good luck with IVF!

[janiedelite]

Yeah Firewatcher. I've certainly been feeling better since being on estrogen. I'm certainly not normal, but I have more energy and less pain.

Hi njfainter. I just saw my GYN today and asked her why I feel worse starting mid-cycle, then it builds til about the second day of my period when I come out of the slump. She said, like you, that's when progesterone is released. She read my Mayo doc's opinion about feeling better during pregnancy but was hesitant to be enthusiastic because she said along with increased estrogen and blood volume, you have increased progesterone during pregnancy too.

Two more days til I have to stop the estrogen!

I forgot to mention something on an entirely different note... when I first visited the infertility doctor, he read through all the notes from Mayo and saw I was diagnosed with POTS/OI. Next, he said something that made me mad at first. He said "LOOK! They diagnosed your symptoms. Congratulations!" I was ticked because, hey, I worked really hard to get my symptoms diagnosed. Then I laughed and realized he was right...

[ramakentesh]

They diagnosed your symptoms. That is quite funny. Cause at the end of that day that is what the names of these conditions do... I wish they would change the name to something a little less practical:

Its like calling diabetes Chronic Thirst Syndrome (CTS).

Id like something like Postural Vascularopathy or hypersympatheticia Dysautonomia

[all4family]

Hi Janie,

So glad to hear that you are feeling better. You desere it. Also good luck in the baby making department. I will be praying for you and your husband to be blessed. I imagine if the estrogen helps you, then being pregnant would help too. I don't know that much about hormones though. I just wanted to wish you well and tell you I am so happy that you are feeling better.

Hugs

Suzy

[janiedelite]

Well, yesterday was my last day on the clomid. Sure enough, I'm back to peeing hourly whatever I've just drank... . Another thing I noticed this past week was my back and neck pain was nearly gone! Along with my flushing and burning skin pain! My back is usually so stiff, but felt good all week while I was on the pills. I started having back pain over 10 years ago, along with headaches that I noticed got better if I laid down... hmm. All of these crazy symptoms are now so obviously just caused by pooling and lack of bloodflow to my upper body.

I saw the gyn/fertility doc today and told him of my improved orthostatic symptoms this week and he said, once we're done trying to conceive, I'd be well-served to go on birth control to eliminate my periods based on how I responded to the estrogen this week. I asked if he meant the pills that give you a period every 3 months, and he said you didn't really even need a period that often. I didn't know that!

Does anyone else here have experience with limiting your periods to once or twice a year?

[firewatcher]

I had mine limited to three a year for migraine control. It was great. I did this for most of my adult life, until my husband got a vasectomy after boy #2. I think that is when all my ANS stuff began to get worse, when I stopped the pill. I had to stop my estratest and have lost weight and been far more symptomatic since.

Waaaaahhhh! I want my hormones back!

[EarthMother]

I did the Mirena IUD and had basically no periods for five years (scant at best). Then tried some of the new extended dose BPs like Seasonique. I think I was already in a POTS spiral by then so hard to say if they helped at all. My cardio this year decided I'm "old enough" and must stop all of the BPs. So I've been flying solo (at age 46) in perimenapause since last Oct.

As for the frequent (constant) urination ... this was one of my hardest symptoms. My Doctor prescribed DDAVP (its an anti-diuretic used often for little kids with bed wetting problems). I took a tiny dose once or twice a day off and on as needed for years. My weight is pretty stable these days, so I haven't found the need to use it right now. If I start to rapidly loose weight again (my first sign of a POTShole up ahead) then I'd use the DDAVP again in a minute.

Good luck with all of your adventures.

[janiedelite]

Thanks for the input about the birth control. It's good to know it would be okay to go without a period! And thanks for the advice on DDAVP. Another improvement I noticed over the last week was that my constant sore throat was gone while I was retaining fluid on the estrogen. I've never been this thirsty before, and now I realize I get some relief from the sore throat just after I drink but the pain returns within a few minutes (and I go to the bathroom soon too). Small doses of DDAVP might be helpful for sure!

More than anything, this past week has given me hope that once we're done trying to conceive there are meds out there that will provide some symptom relief!!!!